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How Virtual Friendships Save Lives

Question: if you have a health condition can the Internet help?

Answer: Yes. Virtual friendships and the right Internet information can save lives.

And there is often a domino effect in life: one thing leads to another.

The Diagnosis

In 2002 my husband was diagnosed with a chronic form of leukemia. The initial information I read about Chronic Lymphocytic Leukemia was in my Medical Surgical textbook copyright 1990—patients die within five years. I panicked. Then I went to the net which was current—and there I found information indicating longer life spans… Okay–deep breath, and another and another.

We got a referral for an oncologist and made an appointment. He took our case, giving us good advice and setting up a schedule for routine blood tests. CLL is not a cancer that you treat immediately. But we needed to settle into this new life and FIGHT BACK.

ACOR and CLL Topics

A week later my sister-in-law, an RN, sent me the magazine, Cure. It contained an article about CLL and at the very bottom of the piece was a link to ACOR, the association of cancer online resources. Amazing. With ACOR I could access people through email–other CLLers from all over the world. How does it work? We ask questions and receive answers and targeted help from each other, but also from a research scientist and doctors who provide help. CLL is a complicated disease, but there is always someone ready and willing to either inform a newbie or provide the latest information on medications and treatments. And all of this happened within a few weeks of the diagnosis. If you are reading this and have cancer, check out ACOR, //www.acor.org/

Through the ACOR list we found CLL Topics, a website that provided scientific and researched information about the etiology and treatment of this leukemia. I emailed the owner with a question, not expecting a personal answer. Not only did she respond but also gave me her phone number and encouraged me to call with my concerns. Her husband had CLL and she was dedicating her skills (she is a research chemist) and knowledge to help others while raising money for clinical trials for anyone with CLL. Her work had led her to important connections with CLL specialists at major cancer centers, and as a result she now attended annual meetings for ASH, the American Society of Hematology. In just a few weeks we had found a comforting parallel universe to help us deal with this disease. And all because of the net!

CAUTION: Research and Diplomacy

Some say a little knowledge can be a dangerous thing. No. Not if you use it correctly. We researched and read and double checked and read again. When the disease progressed, we brought some of our ideas for treatment to our oncologist. This produced an emotional bump in our journey. His nurse suggested we find another physician! We did work out our differences. And that was seven years ago. Today, physicians are more accustomed to clients bringing Internet research to a consultation. Regardless, keep this in mind: a study in the Annals of Family Medicinefound that more patients worry about a breakdown in communication with their physicians than they do technical errors. The physician author concluded that a therapeutic relationship between physician and patient better insures compliancy.

So a word of caution: YES, do your research, bring it to your consults, but always honor the doctor’s knowledge. Diplomacy should insure you stay on good terms. Of course if your relationship fails, get another doctor. Doctors work for you and you want someone there when you truly need help.

Internet Friends Save Lives

Now it’s ten years since my husband’s diagnosis and he is out of remission. The fight is bigger than ever. But because the owner of CLL Topics has become a medical advocate and a true friend, my husband is again winning the battle. Her influence helped us make contact with specialists who immediately offered treatments that could help.

Internet friends from ACOR and the yahoo CLL/SLL list write us back asap, providing information about side effects and their personal treatment results. All of this means we are not alone–we are fortunate and blessed, receiving help from folks in Australia, Ohio, Virginia, and Missouri etc. Twitter friends provide support too, inquiring about how things are going. One blogger friend printed a guest post for me that truly lifted my spirits.

Of course all along we have had our family and friends to support us. They send good wishes, love and prayers on a daily basis or bring over meals and provide rides to the airport and the store. Life would be so much more difficult without them.

But in the very beginning, we knew nothing about CLL. It was a diagnosis, leukemia!– a scary diagnosis. The good leukemia to have, some doctors say. No! No leukemia is good to have.

The Internet has definitely provided us with powerful information and even more powerful connections. So when I asked my husband if he agreed with the title of this post: how virtual friendships save lives, he said: “Hell yes!”

Virtual hand clasps occur every day on the net.

For more information, read this post from Kevin MD http://www.kevinmd.com/blog/2013/06/5-benefits-online-patient-communities.html

When I saw the title, before reading about the subject, I had an immediate thought. Beth could write a book about this Just by writing this article you have encouraged many people. Your experienced advice should answer many questions that may hold people back from taking advantage of an available resource.

Aw, Pat, great comment. THANKS. You have been so helpful through all of this. Sincere and truthful communication is the key to success in life. If anyone remembers me when I’m gone I want them to say: She knew how to communicate!!! Beth

This article will help many people who are in need of medical assistance for a variety of reasons. We have felt the impact the internet has provided in our lives, and I trust this article will lead people to a place where they can find similar help. Thanks for having the courage to write it.

Great post Beth. I think the more information and knowledge one has on their health and disease the more they feel control of it. Nothing is worse than that feeling of helplessness and having no control over a disease or disorder. We have to have control. Health care providers don’t know everything and will be the last to admit it. We have to be our own advocates. To have knowledge and control empowers us. Knowledge and control is powerful medicine to our own well being. We have to continue to fight and not surrender to the beast. Your blogs are powerful education tools and very informative. As nurses the most important skill we have is teaching. Without that we are just robots. You also have the great skill of writing. Keep writing and teaching. You touch many lives.

You words are so encouraging, as the purpose of this blog is to help people, research for them, answer their questions and bottom line educate. I remember on the show ER how the writers stressed that doctors run in to save, but nurses are there to nurture and to teach. Their role is often ignored, but when you leave the ER or the hospital and go back to your life, it’s the teaching and what you have learned about your condition that carries you through. Nurses like you make such a huge difference. Beth

Beth,
Your post just brought tears to my eyes. I know the difficult journey you’ve faced, the paradox between health and illness, the known and unknown, the will to fight and the incredible exhaustion…
I’ve lived with a fatal disease since I was 4 years old and I am now fighting a complicated case of atherosclerosis, that medication and lifestyle changes may or may not be able to control.
The world of medicine is highly intricate these days, the technology is amazing and yet medical technology doesn’t fix everything, no matter how much you believe it should!
The friends I’ve made via internet support have been astounding. The stories I’ve encountered, the hope, the tragedy, the cured and those who cannot be cured all make my story less painful to bear. Having even a moments peace every few days is a necessity when facing life threatening illness. Family and friends help, their love and support is immense, it’s a lifeline you need. However, it is the people going through it, who face whatever you’re facing that truly understand the desperation one feels when facing the unknown.
Sending you and John love, hope and strength!

Oh thanks so much, Natalie. You have laid it out so clearly: we get love and help from many people, but those who are struggling in the same boat, researching and questing just as we are, often give us the most support–and often are total strangers–at first. I am glad you get support when you need it. Reach out and keep it up. And thanks for your positive words, Beth

Hi Marianna, sorry about your tech troubles. Though frustrating, maybe it’s good to take a break–and you had finished your 365 days so you deserved a break.

Thanks for the hug and the positive thoughts. You know very well that we are all in this for the long haul. Certainly opening email and twitter to positive messages and warm outreach truly helps. Peace and more hugs, Beth